2018 Annual Report Page 1 a Message from the President/CEO
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AANNNNUUAALL RREEPPOORRTT 22001188 2018 BIAA BOARD OF DIRECTORS Officers Chairman Vice Chairman Douglas L. Brewer, M.B.A. Harold Ginsburg Talladega, Ala. Dallas, Texas Secretary Treasurer Shana De Caro, Esq. Benji Wolken, C.P.A. Pleasantville, New York Chicago, Ill. President and CEO National Medical Director Susan H. Connors Brent E. Masel, M.D. Vienna, Va. Galveston, Texas Directors Mark J. Ashley, Sc.D., Bakersfield, Calif. Michael J. Bush, M.B.A., San Francisco, Calif. John D. Corrigan, Ph.D., Columbus, Ohio Maureen Cunningham, CFRE, St. Louis, Missouri Sheldon L. Herring, Ph.D., Greenville, S.C. Julie Fidler Dixon, M.S., CRC, CCM, CBIS, Ankeny, Iowa Brant A. “Bud” Elkind, M.S., CBIST, Ft. Pierce, Fla. Wayne A. Gordon, Ph.D., New York, N.Y. Kent Hayden, B.A., Dallas, Texas Julie Post-Smith, B.S., Edwardsville, Ind. Ira Sherman, Esq., Washington, D.C. Gregory J. O’Shanick, M.D., Richmond, Va. Meetings were held March 19, May 1, July 11, August 24, November 2, and December 18, 2018. 2018 Annual Report Page 1 A Message from the President/CEO Dear Friends: Thank you for making the Brain Injury Association of America the Voice of Brain Injury! In 2018, your support made it possible for BIAA to advance brain injury awareness, research, treatment, and education to improve the quality of life for all people affected by brain injury. This year, BIAA and its grassroots network advocated for life-saving research and desperately needed healthcare for the 2.5 million children and adults who sustain life altering brain injuries in the United States each year. We fought for community-based services and supports for the 5.3 million people who live with permanent disabilities because of brain injury. BIAA welcomed millions of visitors to our website and, together with our chartered state affiliates, answered thousands of individual requests for help through our National Brain Injury Information Center’s toll-free line 1-800-444-6443. In 2018, BIAA’s chapter in Maine continued its direct service to individuals with brain injury and their families as did BIAA’s chapter in Texas, which launched a new coalition to improve access to treatment and support for people who experience a broad array of neurological conditions. BIAA continued to provide on-site, on-line, on-demand education to each of our constituencies. We also continued to develop our certification programs to meet the needs of professionals all along the career ladder. With an eye toward providing help, hope, and healing, BIAA moved ever closer to a better quality of life for everyone by pursing three goals: 1. Improve care and support for individuals with brain injury and their families. 2. Increase awareness and understanding of brain injury and the Brain Injury Association. 3. Increase our capacity to achieve BIAA’s mission. On behalf of the Board of Directors, volunteers, and staff, I am pleased to present the Brain Injury Association of America’s 2018 Annual Report. Susan H. Connors, President/CEO Brain Injury Association of America 2018 Annual Report Page 2 National Brain Injury Information Center The Brain Injury Association of America (BIAA) established the National Brain Injury Information Center (NBIIC) to assist individuals and families who experience the life changing, sometimes devastating, effects of brain injury. Callers who dial 1-800-444-6443 speak to compassionate, knowledgeable specialists who assist in locating rehabilitative, legal, financial and other support services critical to maximizing recovery. BIAA works in collaboration with its chartered state affiliates to offer NBIIC services in all 50 states and the District of Columbia. Nationwide, NBIIC specialists responded to 30,000 calls for help in 2018. Who Contacted NBIIC in 2018 1% 27% 34% 38% Family/Friend Person with brain injury Professional Veteran/Family 2018 Annual Report Page 3 2018 NBIIC Topics Top 10 Issues for NBIIC in 2018 Insurance Employment Relationship Issues Concussion Financial Mental Health Rehab Behavior Caregiver Family Coping Cognition 0 200 400 600 800 1,000 1,200 1,400 Long-term issues (cognition, behavior, and caregiver coping strategies) were the most frequent call topics of 2018. These data reinforce BIAA’s recognition of brain injury is a chronic condition, emphasizing the value in making information, resources, and support available throughout the lifespan. Sample responses from people who contacted us for information and support: • “I am so grateful for taking the time to assist me. Thank you again!” • “Thank you for taking the time to provide all this information, I should be able to get somewhere with this.” • “You are a godsend and a wealth of information! Thanks so much for giving us a place to start! “ • “Thank you so much for your kind words and encouragement. I truly appreciate all of the resources you gave me to help my family!” • “Wow! This list is awesome and so very helpful. Thank you! I appreciate all of the time and energy that has gone into making this list.” • “I appreciate your promptness in returning my call and for sending me helpful information. One of things that really helped was just being validated about my thoughts and feelings about my situation.” 2018 Annual Report Page 4 Advocacy The Traumatic Brain Injury (TBI) Reauthorization Act of 2018 was signed into law by President Trump in December 2018. Lawmakers passed the legislation to commemorate the retirements of Senator Orrin Hatch (R-Utah) and Representative Thomas J. Rooney (R-Fla.). Sen. Hatch was the republican senate sponsor of the TBI Act of 1996. The law authorizes the U.S. Department of Health and Human Services (HHS) to conduct research at the National Institutes of Health, to conduct surveillance and public education programs at the Centers for Disease Control and Prevention (CDC), and to make grants to state agencies and protection and advocacy systems. The reauthorization designated the Administration for Community Living (ACL) as the administrator of the TBI State Grant Program and authorized the CDC to conduct a National Concussion Surveillance System. The program was authorized at $11.321 million until 2024. BIAA President/CEO Susan Connors presented awards to the co-chairs of the Congressional Brain Injury Task Force, Reps. Bill Pascrell, Jr. (D-N.J.) and Thomas J. Rooney (R-Fla.), for their service to individuals with brain injury and their families. The task force hosts Brain Injury Awareness Day on Capitol Hill as well as briefings throughout the year. The leaders also advocate for increases in brain injury programs across the federal government by circulating support letters to appropriators. Thanks to BIAA’s persistent advocacy, patients with brain injury and stroke were spared in the Medicare Payment Advisory Commission’s plan to compensate inpatient rehabilitation hospitals/units at the same rate as skilled nursing facilities. At BIAA’s urging, Congress passed and President Trump signed the Sports Medicine Licensure 2018 Annual Report Page 5 Clarity Act to protect physical therapists and other health care providers furnishing medical services to an athlete, athletic team, or team staff member when they travel with the team across state lines. BIAA released Non-Lethal Opioid Overdose and Acquired Brain Injury, a comprehensive issue paper that was circulated to brain injury champions on Capitol Hill as well as to the Opioid Safety Alliance. The Substance Abuse and Mental Health Services Administration (SAMHSA) invited BIAA to present during the webinar, “Traumatic Brain Injury Among Service Members and Veterans: What Behavioral Health Providers, Families, and Peers Should Know.” BIAA’s Director of Consumer Services Greg Ayotte discussed the Association’s past accomplishments and current focus, including an overview of BIAA’s National Brain Injury Information Center and a preview of the Brain Injury Fundamentals Program. BIAA served on the Consumer Advisory Board (CAB) for the Chronic Effects of Neurotrauma Consortium, whose mission is to fill the gaps in knowledge about the basic science of mild TBI and its effects on late-life outcomes and neurodegeneration, identify service members most susceptible to these effects, and identify the most effective treatment strategies. BIAA is a member of the steering committee of the Coalition to Preserve Rehabiliation. The Coalition submitted extensive comments to the HHS Office of Civil Rights on Nondiscrimination in Health Programs and Activities provisions within the Patient Protection and Affordable Care Act. BIAA continued its strong support of the Enhancing the Stature and Visibility of Medical Rehabilitation Research at NIH Act in the Senate and the 21st Century Cures Act in the U.S. House of Representatives. 2018 Annual Report Page 6 Education, Research, and Support Services The 2018 BIAA Brain Injury Business Practice College was held Feb. 8-10 in Austin, Texas, at the Doubletree by Hilton Austin. Presenters included Mark Ashley, Sc.D., CCC-SLP, CCM, CBIST; Debra Braunling-McMorrow, Ph.D.; Bill Buccalo, C.P.A.; Susan Connors; Ken Diashyn; Deanna Kuykendall; Mark MacAleese; Brent Masel, M.D.; Corey Morrison, M.B.A.; Drew Nagele, Psy.D., CBIST; Michael Reed, M.B.A.; Joe Richert II, DDS, Ed.S., CBIS; Noah Riner M.B.A.; Romeo Saenz; Gary Seale, Ph.D.; John Stark, Ph.D.; and Peter Thomas, J.D. Sessions included overviews of federal legislation and regulations relating to brain injury rehabilitation; state policy; positive psychology; trends in the rehabilitation market, contracting, and payor relations; best practices in internal processes; and corporate culture. The Academy of Certified Brain Injury Specialists (ACBIS) has been a cornerstone of the Association’s professional education since 1996. BIAA processed more than 1,650 applications in 2018, expanding the certification to more than 6,750 specialists in the United States and other countries. The Association is grateful to the professionals who volunteer their expertise to maintain and enhance the quality of ACBIS education and the rigor of the certification process: Maheen Mausoof Adamson, Ph.D.